Heidi
Don’t Give Up on Living Your Best Life
By Renae Baker
“When my little brother was born, it was anticipated that he might have hemophilia B because my grandfather had it,” Heidi explains. “When I was born, girls weren’t diagnosed with hemophilia because – you know…it’s a boy thing.”
It was necessary for her brother to be seen by a hematologist from the time of his birth. He was taken to St. Jude’s where he was diagnosed with hemophilia B. During that time, the research hospital conducted a study on her family, tracking their genealogy so far back “the chart took up an entire wall!” Heidi exclaims. “It showed everyone in my family who had hemophilia B and von Willebrand disease. It was crazy!”
The research also included testing Heidi and her older sister for carrier status. Her sister was 18 and had been experiencing bleeding issues her whole life. Heidi was eight at the time and, although plagued with lengthy nosebleeds, she was not aware of the internal bleeds she was also having. “I broke my arm seven times when I was a kid. Two of those breaks happened before my diagnosis. My arm would swell so badly that three days the cast would slip right off because the swelling would have gone down.” She remembers walking up to her mother with her cast in her hand and asking, “Mom, is this normal?”
Her mother knew it wasn’t. Back to the hospital they would go, but additional x-rays would only reveal the break, not the hemophilia. Nevertheless, Heidi considers herself extremely lucky to have gotten the diagnosis of moderate hemophilia B at an early age. “The title,” as she calls it, seems to be a passport of sorts. She frequently encounters people who doubt her claim that she is a bleeder, and she finds it a relief to be able to tout the credential of the diagnosis from the esteemed research hospital.
Once diagnosed, Heidi was instructed to infuse one day before her menstrual cycle and three days into her period. She would also infuse whenever she experienced a bleed confirmed by her doctor. In retrospect, she realized this probably wasn’t the optimal course of action. Heidi was frequently on crutches due to knee bleeds. “Or I’d hit my toe and it would swell up to an abnormal size. We asked to be put on a prophy regimen but the following course of action was to increase my on-demand prescription. However, it was just not adding up as to why I was having so many bleeds. I was finally put on prophy at age 17.” From then on, Heidi was able to infuse once a week to prevent many of the bleeds she was experiencing.
With her brother’s diagnosis, Heidi’s parents became connected with the bleeding disorders community and began attending local events and attended The Coalition for Hemophilia B symposiums in New York City. Heidi also began to attend local chapter events and got to go to a bleeding disorders camp in her area.
At age 17, Heidi became very active with her local chapter and The Coalition for Hemophilia B, and was soon connecting with other women with hemophilia B. When she was 20, Heidi attended her first Gen IX meeting. She has since been to multiple mentorship and advocacy Gen IX events.
“I’m so close with the hemophilia B community now because of the Coalition’s programs, symposium, women’s retreats, Gen IX events, and more. These events have helped me meet so many people who have had similar experiences with bleeding issues like I have!”
Heidi is actively involved with the Coalition. The Coalition’s acknowledgment and support of female bleeders have been a tremendous help to her because as Heidi shares, “One of the most frustrating things has been having people tell me to my face that I can’t have hemophilia, that it’s impossible.” Indeed, she has even heard this from her own father.
“My dad, to this day, isn’t convinced I have hemophilia because of the old-fashioned beliefs that it only affects boys.” Heidi laughs through her ascending inflection as if the statement was a question. “He’s coming around to it more now because of all the education we have received through the Coalition. There is so much education within The Coalition for Hemophilia B and my parents and I have learned so much! Genuinely, this group is family!”
“Some days, I might have an elbow bleed and be in so much pain I feel the weight of the world on my shoulders and then blow a vein while trying to infuse. That’s the worst,” she continues. “Thankfully, I have such an amazing husband. Jacob encourages me and says I’ve got to get the infusion done. If I just can’t, he will do it for me in spite of the fact that he hates needles. He’s such a blessing!”
Just past newlywed status, Heidi and Jacob have been together for six years and have known each other since they were babies attending the same church. He accompanies Heidi to as many Coalition and community events as possible.
“Hemophilia is often very challenging, painful, and stress inducing; however, the family feel, the connection and hope this close-knit community continually offers me is extremely comforting and rewarding.
If I didn’t have hemophilia, I would not be the person I am today,” Heidi says with gratitude, “and I like the person I am today!”
The person she is today has just started nursing school, “I love learning new things and am especially interested in learning about illnesses and medicine.” Heidi says with a light in her eyes. “At the airport during a long layover on our way to our honeymoon, I came across a book called, “Girl, Wash Your Face” by Rachel Hollis. I felt very motivated, and while on our flight, I turned to Jacob and anounced, ‘I think I want to go to nursing school!’”
Although Heidi’s knees bother her a lot, she has decided if there is something she wants to do that she is passionate about, she isn’t going to let her hemophilia stop her. Heidi hears women speak up at bleeding disorder meetings and talk about how they haven’t been able to obtain a proper diagnosis yet, how they can’t get in to see the right doctor, or how they feel they are being dismissed and are not being listened to, and it’s really upsetting to her.
“Once I received my diagnosis, I didn’t have to worry about all of that anymore. I feel a little like I have something like survivor guilt because I was able to be diagnosed. There are so many women who have been struggling, who have had such rough childbirths, and who feel like their bodies breaking down because they’ve been bleeding their whole lives without the help of a true diagnosis and benefit of treatment. I feel deeply for them. It hurts my heart.”
Heidi tells all the women she meets who are struggling that she will help in any way possible – whether it’s advocacy, sharing resources and information, or assisting in finding a doctor who understands bleeding issues in women. She offers this advice to women in the community who know something is wrong and that they need help obtaining a proper diagnosis, “Just keep pushing. Keep advocating for yourself. Reach out to other women who can help you advocate – including me. Don’t give up. Until you have the answers you are looking for you won’t be living your best life.”